Hi Bijou ,
Sorry to hear you have to join our group, but you will find lots of help on here, like Carole D suggests, there are people on here who have been there and got the-shirt so to speak.
i was diagnosed in 2003 , and despite a long and hard road with lots of treatment, i am still around and kicking 😉 so don,t despair, lots of help, and…[Read more]

Hi,
Yes Dex does affect the voice , i have been on Dex for 5 years, and about 6 hours after i have taken them in my monthly cycle my voice becomes hoarse and husky, in my case it lasts for a few days, every month, i have not had any other problems with my throat / voicebox etc in that time.
Hope all go,es well for you .
Mike.

Hi , Just a quick line, very sorry you are in such pain my friend .
In your case as it has gone on so long I have no answer, so this may be more helpful for others, in future, though the fact you say abdomen pain too makes me wonder.
I recently was in SO much pain that lasted almost 4 months, I was in fact screaming with pain when i got out of…[Read more]

Hi Simon ,
Great you are in remission , I can identify with your emotions my friend, I,m afraid it is another side order of this disease we all have to cope with .
Fortunately i have someone close who comes around every day and i manage to get out for an hour os so, for a coffee etc, but like you i tend to keep everyone else at arm,s length…[Read more]

Hi Simon ,
Great you are in remission , I can identify with your emotions my friend, I,m afraid it is another side order of this disease we all have to cope with .
Fortunately i hav esomeone clos ewho comes around every day and i manage to get out for an hour os so, for a coddee etc, but like you i tend to keep everyone else at arm,s length…[Read more]

Hi , Sorry to hear you lost your father in 2014, and that Mam is also poorly .
Slightly different, but in the same vein, My father died of MM in 2008 , i was diagnosed in 2003, but never told him, but I have always been told MM is not hereditary, again my consultants were amazed when i told them dad died of MM , so there are things about this…[Read more]

Hi , Yes there are so many drug combo,s it,s hard to work out which ones cause mouth problem,s but they keep us chugging along also. Good luck to you too, all the best for a long and happy future.
Regards
Mike.

Hi ,
I am on cycle 58 of Revlimid / Dex /Cyclophos , and have very loose teeth, have had 6 extractions in the last 12 months, not sure which of the drugs cause the problem, but nothing i do however clean and careful i am with my mouth, nothing seem,s to stop it , i am told it,s more the gums, the teeth are ok but receding gums make them loose. I…[Read more]

Hi,
Just an update on your recent bad news.
Myeloma is a very individual cancer, but can be treated well.
In my case i was diagnosed in March, 2003, and still on treatmnent .
I am on a drug Revlimid, and have been on it now for several years.
I have been on many treatments and had a Stem Cell Transplant,and may have another, you will become…[Read more]

Hi Tina,
My abiding memory from my Stem Cell in 2008 was a yearning for ice cold things like the long ice sticks we had as kids and still available, try to find out if you have availability to a freezer, you may need to stock up on things like that from your visitors, also ice cubes are helpful if you have a few mouth ulcers,during and after…[Read more]

You Lucky people, (sleep wise ), how i envy you , i take Dex at 8am, and now Revlimid at about 7pm, half a sleeping tablet at 10pm, and STILL only have about 3/4 hours sleep, i am exhausted most days, and cannot find the recipe,for sleep, so wish i could sleep for 6/8 hours one day, but at least the Rev/Dex is working well for me, i must never…[Read more]

Hi Debs,
Thanks for the info, on when to take Revlimid, i am desperate for a good nights sleep, i take the dex about 8am in the morning, but the revlimid i vary anytime afternoon or early evening, as i take a half a sleeping tablet at night, so i will stop the sleeping tablet ,and take the Revlimid about 9pm, anything is worth a try, to sleep…[Read more]

Hi Colpot,
Thats, amazing news for all of us, thanks for sharing it with us.
I am on Revlimid, at the moment, 15mg for 21 days each month, and 40mgs of dex over 4 days, once a month, as a maintenance cycle.
I am about to start my 9th cycle, so a long way to go to catch you up ;-)but my paraprotiens are down from 22 to just 2 and stable, so I…[Read more]

Hi Roz,
Cannot think of words to help you, but feeling for you at this time , its an awful time for you,just hope you pull through, and think of the good times you had together, you were a rock for him during the last year or so, if only he knew of the times you were on here,trying to get the best for him,and asking questions, here and at the…[Read more]